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Common Question Answered: What is chemo like?

I plan to cover a range of topics in this blog including treatment/medical updates, exciting scientific progress/breakthroughs (explained for the lay reader 🙂 ) and also answering some common “curiosity questions” that I suspect many people have — based upon the number of times I have been asked already. Cancer is very much a six “four-letter” word – so I know many people are uncomfortable asking certain questions, even if they are really curious to know the answer. I believe knowledge is both power and usually comforting – more often than not, “guessing at the unknown” portrays a much scarier picture than reality!

Aside from “How are you doing” the #1 question (by far!) that I get is “What is your chemo like?” Since I get asked it so often – I think many more of you probably are curious to hear the answer, then have actually asked.

The short answer: My current chemo is not as bad as whatever you are imagining! (My chemo regimen in 2012 was a lot rougher but I work very hard to “live in the present” – so I’ll focus on that 🙂 ) Also note that different chemo cocktails are very different from one another, so my experience may be very different from other cancer patients you know. I currently get a weekly chemo infusion every Tuesday (depending on the week, sometimes an infusion on Wednesdays too) – so to quench your curiosity, I figured I would lead you through an average infusion and let you see how the process works and what it feels like. Hint: It is not as bad as you’re imagining.Given a range of treatment choices, I intentionally chose a relatively light chemo cocktail, to have the best quality of life and to not “overdose” chemo if I didn’t need to.

The day before infusion, I prep by fasting (an interesting topic for a future scientific post!) as well as take a nausea pre-medication due to a well-known aspect of chemotherapy called “anticipatory nausea” – essentially I & many cancer patients are like one of Pavlov’s Dogs – I associate the infusions with nausea – so the nausea starts to build on Monday afternoon as my brain uncontrollably begins to remember previous infusions. The infusion center actually has very good bagels – I wish my Pavlovian conditioning caused me to taste cream cheese but alas, I guess tasting cream cheese in my mouth the day before infusion is too much to ask for.

I get my infusions at the UCSD Cancer Center every Tuesday. UCSD is actually the exact same exit off the Interstate as my job – so Tuesdays are remarkably “normal”. I put my work laptop in the car, drop the girls off at school and then take my normal work commute –except on the exit ramp I take a right turn instead of a left…

If I could describe the infusion center experience in one word I would use “waiting”. That seriously is how you spend most of your time. Thank goodness they have free wifi!

When you first show up, you check-in. And then… wait. Sometimes 5 minutes. Sometimes >30 minutes. First wifi login of the day!

A nurse then takes blood & urine samples for a battery of ~20 different assays (blood counts, liver function, kidney function etc). Basically for chemotherapy, they figure out in a clinical trial what dose gives such bad toxicity that people are unable to take the drug. They then subtract off a little smidgen and… that’s the dose you get! Rocket science huh? So they need to be careful that you’re “healthy enough” for chemo before dosing – hence the barrage of weekly tests. Whenever you hear your doctor tell you that you’ll get the “maximum tolerated dose” (of anything) you know you’ve signed up for quite a ride! On the good side, I’m so closely monitored, I’ll probably never ever have another medical surprise – I get an extensive physical weekly! Blood sample? Check. Urine sample? Check. iv-line installed into my imbedded chest port (this is how they dose long term chemotherapy – the drugs are too toxic for standard arm vein dosing)? Check. And then wait… Sometimes 1 hour. Sometimes 2 hours. Now co-workers understand how I am able to keep so on-top of work emails “during infusions”! Basically because I spend most of the day in a waiting room! Ha

Eventually they call my name & I get led back into the main infusion room. Imagine a large room with I’m guessing ~100 lazy boy recliners, each with their own TV. Ringing the room are the “private suites” where instead of lazy boys, patients in them get an entire bed. Because of a lazy boy shortage, I got a bed once. It was a nice comfy perk that week (sort of like an unexpected business class upgrade when you paid for coach, I enjoyed it!)

I then settle into my assigned chair, re-fire up the laptop and… wait. iv Pre-meds (anti-nausea etc) take about 60 minutes and then the fun begins. One of my current drugs (Avastin) has no acute side effects so when they start that drip, it is actually a bit anti-climactic (Asking: “Are you sure they put the drug in there?” crosses my mind some weeks).

After Avastin is done, the real fun begins… This is the cytotoxic chemotherapy portion of the day (cytotoxin is a fancy word for poison), currently I am only on one cytotoxin “5-FU” (I’ll let you decide for yourself what “FU” stands for – but my personal definitions aside, scientifically you can read about it here. I firmly believe that the Universe has quite the sense of humor. Being a cancer researcher immersed in all of the latest advances in modern therapies – what cancer do I get?? Ahh, yes, of course. I get the one where the main treatment drug was discovered 15 years before I was born in 1957. Great. (also unfortunately a clue on the difficulty of CRC treatment research compared to some other cancer types)

The first time you witness someone (in my case myself) getting dosed with cytotoxic chemotherapy it is quite memorable. First of all it is always 2 nurses. They triple check the patient, the drug, the dose etc. in a similarly complicated routine that you see in nuclear missile silos prior to launch codes being activated. Giving one of these drugs to the wrong guy or in the wrong dose could be fatal! Great. Safety first! The chemo nurses cover themselves with a safety shielding to make sure no chemo gets on them. Then they proceed to inject you with it. Great. Safety first! After that, it is pretty anti-climactic. A simple unhook of the iv line & “have a good week!” and then I am out the door…

Thankfully the side effects of my current “chemo cocktail” are not too bad. Seriously, they’re not. But poison is poison – usually nausea starts to hit within 15 minutes after the infusion. I spend the rest of my Tuesday first on an acupuncture bed (I can’t explain it scientifically, but it really does help!) and then after taking a pile of anti-nausea meds, I lie in my bed at home for the rest of the day. Amazingly, the nausea is already 80% gone by the next morning when I wake up and “normal life” can resume for the next 6 days.

As I said, the nausea really only impacts me on the actual infusion day – the only other side effects are relatively minor. After a few days delay, I’ll get some fatigue (due to blood cell tox) and my legs and feet will feel sunburnt (essentially chemical burns) – but these side effects are tolerable and don’t impact life too much!

During my current weekly chemotherapy, I bring the girls to school every morning. One way or another, I work every day. I play with the girls each night after work. Life in all its glorious fun goes on…

Although it does feel like I really have to start remembering to wear more sunscreen.

9 Comments on “Common Question Answered: What is chemo like?”

Tom, thank you for the informative posting…it DID answer some questions I had (and didn’t ask either of my parents when they were going through it) about chemo. It’s good to hear you’re able to carry on your normal family life during this process. One question I do have is regarding the frequency of the treatments. You said yours are weekly but I think both of my parents had theirs monthly…different type of chemo being done or advancement in technique? Dad’s was especially hard on him…he’d be sick for nearly a week, ok for 7-10 days, then usually be hospitalized for 3-6 days, ok for a few days, have his treatment; and then the cycle would start again.
Again, thank you for being willing to share.

Hi Loren, glad my post was helpful to you. Each chemo cocktail (different for each type of cancer; even for a single type of cancer there are multilple options) is different. Some are dosed weekly, biweekly, monthly… Some require hospitalization, some are done in the infusion center, most new drugs nowdays are daily pills taken orally at home. The post only describes my current chemo regimine – e.g. In 2012 my harsher chemo was biweekly and I was bed-ridden for 3 days after each infusion & I had lingering significant side effects (hair loss, neuropathy, memory loss) too. I am certainly on an easier chemo currently than in 2012 – although it remains to be seen if I can avoid doing the harsher stuff again… But I’ll worry about tomorrow when tomorrow comes… 🙂 -Tom

Thanks for the comment Chris – I agree, I am very lucky in terms of my current side effects compared to many of our peers… I am impressed you tolerated CPT-11 in a similar way! I had real issues with it back in 2012 (extreme nausea etc.) – 5-FU is certainly a milder drug in terms of side effects!

Hi Beth, I am currently getting dexamethasone as a pre-& post-med. I am actually unaware if it does or doesn’t have impacts upon fasting. Partially based upon the scientific work of Dr. Valter Longo, I make the personal choice (this is not medical advice, I’m not a MD!) to fast ~40 hours biweekly (logistically easy, I don’t eat the day before chemo or day of chemo). If I remember correctly, his work describes a bit longer fast but I try to balance logistics, quality of life & theoreticals. I can not stress highly enough however that I keep a close eye on my body weight. I only do the fasting because I have had zero problems maintaining body weight doing this chemo/fasting cycle. If I wasn’t able to maintain body weight, I would stop my fasting!